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  1. Lilas

    Sexual Desire, Depressive Symptoms and Medication Use Among Women With Fibromyalgia in Flanders, 2021, Van Overmeire et al

    It reminds me of a neurologist I consulted at the start of my ME. He knew that I had chronic generalized pain, among other symptoms. Well, he urged me, not without boldness, to have a more active sex life :jawdrop: (without knowing anything about my privacy !), because that would lessen my pain...
  2. Lilas

    An Observational Study Comparing Fibromyalgia and Chronic Low Back Pain in Somatosensory Sensitivity, Motor Function & Balance, 2021, Mingorance et al

    (With all due respect to those who suffer from it) Even though I have chronic general pain, I am neither anxious nor depressed, I have never abused opioids, I do not tend to overdo my pain levels and I am able to express my emotions well. The main observation that I can make is that these people...
  3. Lilas

    A descriptive, retrospective case series of patients with factitious disorder imposed on self, 2021, Berar et al

    Fairly rare, although the authors claim a likely underestimation. The authors write: '' When they finally suspect FDIS, evidence of the deception is required to make a definitive diagnosis, but it is not easy to demonstrate. Warning signs are helpful but cannot suffice to reach a diagnosis, as...
  4. Lilas

    UK: Guardian: "NHS to give therapy for depression before medication under new guidelines"

    I don't teach anyone anything when I say that but, when a person is in depression, most of the time, he (or she) first and foremost needs to be listened to and heard in what they personally experience in their life. It has nothing to do with a recipe learned in advance and made for everyone. And...
  5. Lilas

    News from France

    In this video, Johann's testimony is revealing of EM, but in the end the comment from the GP is horrible. This doctor brings everything back to the simple fatigue experienced in modern society.
  6. Lilas

    Guardian Article on Mark Cavendish recovering from Epstein Barr

    Sorry to make a little diversion from the subject but, speaking of the BPS belief ... Last week I had a conversation with the syndic of the Order of Psychologists in my Province (CA). I wanted to know the exact limit on the field of competence of their members. I asked him 2 specific questions...
  7. Lilas

    Acceptance and Commitment Therapy for ME/CFS - Discussion thread

    In short, ACT for ME is supposedly helping the person to accept what they are feeling but deny PEM. How twisted and shows a lack of knowledge of ME! Dangerous, dangerous again. Exactly. Psychotherapy carries a clear risk of harm to the person, and unfortunately in the UK you know that all too...
  8. Lilas

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    Momentarily, this Brian Hughes blog post made me forget all the suffering of the ME community and the adversity it faced, managing to get some laughter out of me. It exposes human stupidity in all its splendor! Where is the seriousness of these Colleges of doctors normally required by the...
  9. Lilas

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    I find this discussion very interesting : the concept of dysregulation and its possible or devious implications, "plug in " pwme to device over a long period to accumulate as much data as possible, the importance of a wise choice for the research team, the need to take into account the pwme...
  10. Lilas

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    Oh Arnie Pye ... I'm speechless. What courage and strength it must have taken from you to stay upright! I'm so sorry for you. I can only wish you the chance to meet on your way a benevolent doctor, who knows how to look at the person first. I really wonder if there are pwme who have not gone...
  11. Lilas

    United Kingdom: ME Association governance issues

    Good God ! It is exactly the gibberish defended by the Royal Colleges ... and he integrates the Me Association ? Dangerous. It really seems to me that someone should pass this on to CS.
  12. Lilas

    United Kingdom: ME Association governance issues

    Simply awful. Am I paranoid or does it seems like a disguised attempt to infiltrate an ME organization, in order to confuse, divide and weaken the ME community ...? Either way, the fact that Findley signed a letter endorsing Nice's new guidelines does not excuse his arrogance, unprofessional...
  13. Lilas

    Why do BPS proponents keep ignoring the evidence against their ideas?

    The profound lack of human respect ... oh yes! They don't want to hear our real experience because it just doesn't match their view, intimately tied to their career plan. They are blinded by biases and prejudices, they do not want to see, they do not seek the facts, the reality, the truth...
  14. Lilas

    Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

    17 000 now ! :rolleyes:
  15. Lilas

    Covid-19 vaccination experiences

    I have ME between moderate and severe (for 12 years) and I am clearly the type who does not catch a cold. Dose 1 (Pfizer): Muscle pain in the arm and at the injection site, 24 hours. Dose 2 (Pfizer): intense arm pain, swelling and pain at the injection site, my chronic general pain increased...
  16. Lilas

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Dear Trish :heart::broken_heart:
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